Rotigotine Unpleasant Side Effects (other than augmentation)

[alfieraison]

Good Morning All.

I’m standing at my desk at about 1a.m. and I imagine that you are standing at yours too. Thankfully, I’ve recently begun tests at Guy’s and St Thomas’ Sleep Clinic in London. It’s early days yet but it’s comforting to speak to someone who actually understands RLS rather than my GP, who had to Google it.

I’ve reduced my dose from a daily 8mg Ropinorole (Dopamine Agonist) (DA) and I’m currently stuck on 2mg Rotigotine patches. I’ve tried to get below that without success so far. The consultant is keeping my meds unchanged until after all the tests are complete. (2mg Rotigotine, up to 450mg Pregabalin and 50 mg Tramadol daily and it doesn’t touch the RLS at all some nights)

I keep a diary of foods, alcohol, coffee, significant events, stress level, drugs, sleep times and quality etc. and I advise other sufferers to do so, to try to find a trigger. I’ve noticed a strange thing and I wonder if anyone else has: I get a skin reaction on the site of the patches. On my upper body they actually cause big blisters, so now I put the patches on my upper thighs and cover the patches with thin, clear, flexible, adhesive dressing, to stop them coming off. I alternate between each leg weekly because the sites get enormously itchy and red but not blistered.

However, the remarkable thing is that recently I’ve noticed my RLS symptoms are dramatically more like electrocution on the night that I swap legs. Why would that be? Has anyone else noticed anything similar? I also get extremely itchy around my torso just before the RLS starts and it feels like the same itch as the Rotigotine patch sites, really deeply itchy. I’m aware that stress exacerbates my RLS so it could be stress triggering it but where’s the itching coming from? (I’ve investigated all the other usual dermatological suspects)

In reality, It doesn’t make any difference to the fact that I need to get off the Rotigotine but I’d be interested to know if anyone else has noticed anything similar.

[m1946]

I appreciated your post! I am also under the same hospital (Dr Murphy?) I am on 150150mg tramadol and it seems to work for me after suffering with Ropinirole

[alfieraison1 in reply to m1946]

Thank you for this heartening information. I'm at the same clinic as Dr Murphy. How long have you been on 150mg Tramadol? Any side effects?

[Joolsg]

Try the search engine. I have seen posts on severe itching in the past.I know many people have reactions to the patch. Skin irritation.

Are you under Dr Leschziner?

Did Guys put you on the patch?

RLS-UK has a withdrawal schedule under 'useful resources' & suggests 2 ways to reduce the patch. Cutting it into quarters or switching to Ropinirole pills and reducing by 0.25mg every 2 weeks.

[alfieraison1 in reply to Joolsg]

Thanks Jools, I'm not directly under Dr L but at the same clinic. Guy's didn't put me on the patches, it was a Neurologist at my local hospital in Kent. I'm depending on Guy's to help me kick them once all the tests have been completed.

[ChrisColumbus]

While I can't offer any insight into your symptoms, you'll have seen that skin reactions are a common side effect of the patch and these directions for administration from the BNF:

"Manufacturer advises apply patch to clean, dry, intact, healthy and non-irritated skin on torso, thigh, hip, shoulder or upper arm... Patches should be removed after 24 hours and the replacement patch applied on a different area (avoid using the same area for 14 days)—consult product literature for further information."

Neupro say:

"Patients should report application site reactions that do not go away after a few days, that get worse, or that spread outside the patch site. If there is a skin rash or irritation from the patch, direct sunlight on the area should be avoided until the skin heals. Exposure could lead to changes in skin color."

As you say, knowing about augmentation on dopamine agonists, you want to get off rotigotine and Jools has referred you to the RLS-UK withdrawal schedule.

[alfieraison1 in reply to ChrisColumbus]

Thanks for your interest Chris. I am determined to get free of DAs. My family and I have read the RLS-UK info. It will need a team effort. My thighs are the only place I can put the patches now and luckily the decorative red squares are covered by my shorts when I swim.

[SueJohnson]

I gave you information on coming off the patch and suggested it would be easier if you switched to ropinirole. This would solve your itching and feelings of electrocution.

The equivalent dose is 3 mg of ropinirole. Get at least some of these in the .25 mg size. Then reduce by .25 mg every 2 weeks.

Since you are stuck you can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.

The pregabalin won't do you much good until you are off the DA and your symptoms have settled and 450 mg is probably way more than you need anyway as the average effective dose is 200 to 300 mg.

You can stay on it until you are off ropinirole but assuming it then controls your RLS reduce it by 25 mg every 2 weeks so you don't have withdrawal effects until you get down to the lowest dose that controls your RLS or you could start reducing it now down to at least 300 mg.

[alfieraison1 in reply to SueJohnson]

Thank you for your invaluable information Sue. I will discuss the strategy for getting off DAs with the consultant soon. I'm prepared to do whatever is necessary because the status quo is simply not sustainable.

[SueJohnson]

Are you the same person as alfieraison1?

[alfieraison1]

Yes, I forgot that I already had an account and opened a second one.